Speech-Language and Hearing Therapy

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Browsing Speech-Language and Hearing Therapy by browse.metadata.advisor "De Kock, Alana"

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    Exploration of the coping strategies of parents/care-givers in the management of health and rehabilitation problems of their disabled children
    (Stellenbosch : Stellenbosch University, 2012-03) Duma, Vivian V.; Mji, Gubela; De Kock, Alana; Stellenbosch University. Faculty of Health Sciences. Dept. of Interdisciplinary Health Sciences. Centre for Rehabilitation Studies.
    ENGLISH ABSTRACT: This is a descriptive, phenomenological, qualitative study which explores the experiences of and coping strategies employed by the parents/caregivers of disabled children in the management of their care, including rehabilitation and schooling. The study was conducted in the rural communities of the Eastern Cape outside Mthatha, where parents/caregivers of disabled children have historically had challenges finding suitable schooling for their intellectually impaired children. In 1999, Happy Home community rehabilitation centre for disabled children was established by Mrs. V.V. Duma, a parent of a disabled child. Study participants comprised of parents or care-givers of the disabled children residing at Happy Home. A total of 37 participants took part in the study, comprising of six focus group discussions of six parents/caregivers per group, and one individual interview. Study findings revealed that parents/caregivers used a variety of coping strategies to manage the care of their disabled children. Both positive and negative coping strategies were used. Negative coping strategies included abandoning the child, which was justified by, for instance, belief that the child had been bewitched by in-laws, or on the pretext that the mother's HIV positive status had been caused by the father, leading to the mother abandoning the child. In cases where both parents had abandoned the baby, or the death of a parent occurred, a caregiver, often a relative, would take responsibility for the child. Positive strategies can be characterized as willingness by parents/caregivers to do whatever it takes to help the children to survive and access better opportunities. The caregivers/parents who adopted positive coping strategies were mainly from Christian backgrounds and consequently believed that a disabled child is God‟s gift. These parents/caregivers seek assistance from a number of different sources to help the disabled child, including from faith healers, traditional healers, and western medical treatments. Cultural influences on the reactions of parents, extended family and the wider community as revealed in the study show that disability is seen in negative terms and that the abuse of women, including while pregnant, is supported as a cultural norm. It was found that stress, abuse, and poverty during pregnancy were perceived by parents to be some of the causes of disability in new born babies. Parents/caregivers experienced barriers to health and rehabilitation including; long distances to health and rehabilitation centres with prohibitive transport costs. It appeared that health care providers did not communicate about children‟s conditions or would not treat sick disabled children. There were also data that indicated that there were some health care providers who were helpful and that parents/caregivers used other resources such as radio programmes to educate them about disability. The study sought to understand the challenges that disabled children and their parents/caregivers experienced. The results of the study indicate that workshops with the health professionals to change their attitudes, and enhance their understanding of disability should be conducted. In addition, community awareness and education campaigns about causes, and signs and symptoms of disabilities; and the issue of cultural norms that impact on the abuse of women and negative attitudes towards disabled children need to be conducted among the communities from which the study participants originate. Furthermore, the study recommends that the Health Science curriculum include a generic module on disability studies to be completed by all health science students, to ensure that as health practitioners such as therapists and nurses, they can be more effective in responding to the needs of disabled children.